Category: Superhero Stories

Rohan is 5 years old and lives in the Washington, DC area. His mom says “He brightens everyone’s day and all we want is a brighter future for him because he so deserves that. He makes our hearts burst with joy and he truly is a superhero.”

Sonia-Mae is a 15-year-old KIF1A superhero from England. Her wish is to one day walk unaided again. Her family says Sonia-Mae “knows this is a huge challenge and is embracing life in her wheelchair as she rebuilds the strength in her legs.”

“Since KIF1A can worsen over time, we never know what tomorrow will bring. We’re IMPATIENTLY waiting on treatment or a cure as we live our lives. That’s all I ask. We don’t want riches or a lavish life. Just a cure for him to live a long, productive, pain free life.”

Meet Mario, a four-year-old KIF1A superhero from Spain. His mom recounts their journey to finding a diagnosis and says, “His genetic imperfection defines some of his characteristics but it does not hide him as a person.”

Jim is currently 37 years old and lives in Long Island, NY. It took over 30 years for Jim’s family to get his diagnosis: “The results revealed what could not have been known in 1981–that Jim did not have cerebral palsy and instead had an incredibly rare genetic disorder called KIF1A.”

Rylan is 5 years old and lives in Denver, Colorado. His mom says “He loves and is loved fiercely. It is critical to find treatment to continue Rylan’s growth. He has already taught us more about life than I could have imagined and he has a lot more teaching to do in his lifetime.”